Dr David Tuller: Column in Time Magazine Calls for Halt to Biomedical Long Covid Research

[Countrygirl]

https://virology.ws/2023/11/21/tria...pQZIslI1I-2RZpm3q1W24dL0-jBPjC1CVpJ5FVPybXVAw

Trial By Error: Column in Time Magazine Calls for Halt to Biomedical Long Covid Research​

2 Comments / By David Tuller / 21 November 2023

By David Tuller, DrPH

*This is a crowdfunding month at UC Berkeley for my Trial by Error project. If you appreciate my work and would like to help support it, here’s the link for the November campaign.

Time magazine recently published an opinion piece that calls for an end to biomedical research for long Covid—based, it seems, on what the authors view as the ME/CFS precedent. The title: “How to End the Futile Blame Game Over Failed Long COVID Research.” Although research still has “a vital role” to play, they argue, it needs to be “a different kind” that “no longer focuses on biomarkers and mechanisms” because such studies “are sure to provide ‘promising’ but false leads and divert resources.” (The piece was adapted from a recent article that was published by STAT.)
The authors are Steven Phillips, vice president for science and strategy at the COVID Collaborative, a TK, and a fellow of the American College of Epidemiology, and Michelle A. Williams, a professor of epidemiology at Harvard’s T.H. Chan School of Public Health. They are major players, and they should know better than this. In a prescient essay two years ago on the emerging health burden of long Covid two years in the New England Journal of Medicine, they called for “a formidable, well-funded domestic and international research agenda to identify causes, mechanisms, and ultimately means for prevention and treatment of long Covid.” Now they’ve apparently changed their minds, although the piece does not really explain or even mention this reversal.

Part of their current argument against biomedical research rides on the major deficiencies that have plagued the much-ballyhooed RECOVER initiative from the U.S. National Institutes of Health, as revealed in recent journalism investigations. From the authors’ perspective, the solution to these identified roadblocks is not to re-double efforts to get things right but to abandon the search for biomedical answers altogether.

I was struck that Phillips and Williams seem to be highlighting the parallels between long Covid and ME/CFS as if this were a major insight; they call it “a unifying hypothesis.” These connections have been discussed since the start of the pandemic, and were well-known when the authors wrote their 2021 piece. It is also not a secret that many long Covid patients qualify for and receive ME/CFS diagnoses. So it is unclear why they are touting this notion as if it might be revelatory news.
Beyond that, the parallels they draw between ME/CFS and long Covid research are the wrong ones. The main argument for their suggestion that biomedical research into long Covid should be dropped seems to be that decades of ME/CFS research has not yet managed to crack that puzzle. As they write: “The established track-record of ME/CFS research exploring cause and pathogenesis has been singularly unproductive. By analogy, the current research directed at finding diagnostic and mechanistic clues to Long COVID is a resource-intensive, lengthy uncharted process. In the ME/CFS paradigm it will produce further leads for more biomedical research, but with a low ultimate likelihood of helping patients.”

 

[Mary]

The main argument for their suggestion that biomedical research into long Covid should be dropped seems to be that decades of ME/CFS research has not yet managed to crack that puzzle.

So if we haven't found answers yet, that's why we should stop looking??? This is beyond ridiculous and a bit bizarre too. Ten to one these people have never met someone with ME/CFS who's been ill for decades, or even Long Covid, and asked how THEY feel about no more research for these devastating conditions.

Good for David Tuller for picking this up -

 

[Jyoti]

Reading the article that Williams and Phillips wrote, I was struck not only by the dismissiveness of WHAT they had to say (which was a gut punch) but also by HOW they said it. I felt exactly as I have too many times, sitting in a doctor's office and being told to give over fussing, stop asking for so much/too much, and please...take up no more of my very valuable time with your inscrutable complaints.

They wrote with so much smugness and condescension, all thinly masked with a veneer of compassion. They really want to help.

Right.

This kind of help I think we can pass on.

 

[Rufous McKinney]

So if we haven't found answers yet, that's why we should stop looking???

Are they still funding research on Gulf War Syndrome?

 

[Rufous McKinney]

I haven't been able to answer the how much money question for Gulf War Syndrome:

but checking out this web page, its easy to see Gulf War Syndrome = many of our symptoms. including PEM and literally being diagnosed "with" CFS (oh boy)

https://www.research.va.gov/topics/gulfwar.cfm

 

[Rufous McKinney]

If I were making the argument that we are wasting money studying these things:

why not include the entire Gulf War Syndrome argument? They have known triggers and exposures, and many of our same symptoms. About 200,000 Americans, we still have to probably cover their health costs.

Googling, from 2019:

"Although over $500 million has been spent on GWI research, to date, no cures or condition-specific treatments have been discovered, and the exact pathophysiology remains elusive."

this is concerning. Isn't it? Shocking.

that much money has been expended, that much time (from reading, they weren't;t doing much research/$$ before 2006)....